The Emergency Room Visit That Changed My Views on Medicine...

In late December of 2013, I ended up with extreme head pain. I'm not a strange to head pain in any way because I have Intracranial Hypertension (IH) but this pain was so bad I couldn't take it. I had been at a neurology follow up and his nurse practitioner sent me to the emergency room (my blood pressure was extremely high on top of the pain). I was admitted and kept until Christmas Eve when I begged to get out of the hospital for Christmas.

I survived the Christmas gatherings but ended up calling neuro back on the 26th and was sent back to the hospital by the neurologist on call. He called the hospital, everyone knew I was coming. He called with my symptoms and everything that needed to be done.

I arrived at the emergency room and went to the triage room right away. Despite my best efforts to explain to the nurse that it wasn't a head ache, it was head pain, she insisted that I just didn't take my meds and to have a seat in the waiting room it would be awhile.

To back up a little, if you don't know what IH is, the symptoms are similar to other things. Even with knowing that you have IH, you are usually scanned everywhere to look for signs or blood clots, strokes, a magically appearing tumor, leakage...the list goes on. This, on top of my BP usually skyrocketing when I'm in extreme pain, usually pushes me closer to the front of the waiting line than someone who has a cold. Not that day. I sat for 3.5 hours in the waiting room while people who came in with flu symptoms were taken back.

Here's the thing I didn't realize until I eventually went back. That triage nurse had decided I had a headache and was wasting time or was just looking for drugs. They wanted me to get frustrated and go take some OTC head med and leave. Here's the thing they don't get, if an OTC med would work, I would have taken that instead and not have been there. I started to see how it was going to go when they nurse tossed my chart on the desk and said this one is here for a headache.

I saw a resident who was very confused about IH (even going to the other name pseudotumor cerebri) but went and looked it up and kept coming back like questions. The repeating questions annoy me but that's what happens when you have a rare disease...you repeat and repeat and repeat to everyone you come across.

Then the attending came in and this is where is gets fun. He sits down and explains how coming to the emergency room with a headache is a waste of time. Forever that man sitting there with the words "you are wasting emergency department time and resources" will be burned in my head. I felt defeated. I fight every day to get people to understand and this man in a white coat is telling me that I'm wasting time being there. I tried to explain that the neurologist on call at that hospital already told them I was coming and would need to be admitted but he just kept saying it was a waste a time.

He left, I cried. I held back until he left but the tears burst out when he closed the curtain. They weren't tears for him because he didn't deserve it, they were tears for what my life had become. Every time I am in the hospital, I end up with every single drug seeking person question 3 or 4 times and usually a pysch evaul. Trust me when I say, if they could just find that I was crazy, it would be easier.

I wanted out but I needed to be there, the fight within kept going. I needed the medication that could only be administered inpatient because you have to be monitored during it. I needed a pain med. The resident comes back in and tells me they are taking me to CT and Xray and asks a million more questions. Then Mr Happy walks back in, sits down and explains to me again that I am a waste being there. He says a form of they had patients in the waiting room to take care of and I was wasting everyone's time. The tears started and I wouldn't even speak to him so he left. The resident returned and I said I was leaving.

The resident was completely confused and said he couldn't sign off on me leaving. I explained about Mr Happy's visits in the room and he leaves to find out what's going on. He comes back with paperwork and says if I leave, I have to leave against advice because he won't sign off and neither will Mr Happy. Wait...Mr Happy, the jerk who has spent visits in my little cube telling me I'm wasting time, won't sign off on me leaving? The man who is half pushing me out the door and is in charge of my resident says I have to stay to take his crap? I said something I never thought I would say. I told him I would rather die on my bathroom floor then to spend another minute with a man who is in charge of my care who tells me I'm wasting time. Okay, so maybe I said it a little less nicely, but above my signature on the Against Medical Advice discharge paperwork I wrote it nicely like that :)

Here's the thing, I get that there are people coming in the emergency room with illnesses they could probably treat at urgent and people coming to look for drugs. That's why I answer every single question a million times and try to be nice even in extreme pain. But they have access to my medical records. In fact, I go out of my way to stick with every doctor and hospital in the same health system except for one specialist they didn't have. They have access to it all. That day there was also a hospitalist waiting for my call that I was admitted and the neuro on call saying I was there. They missed all that because they stuck with what they decided about me before I was even evaluated in the back.

I ended up back in that ER a few days later. But that doctor is not allowed in my room alone. There are some long notes supposedly on my file about it. When I returned, I ended up in the hospital for 3 weeks between 2 hospitals in the health system. I have come across him since but he no longer comes in my room without someone else with him. Only once has he tried and I sent him away. BTW that nurse can't come in either. I'm sure she's a wonderful nurse and was having a bad day. But if the pain increase was from something else, I could have died waiting those 3.5 hours (in fact I actually passed out once), so I don't trust her.

This one visit changed my views on anyone in medicine. I no longer just went along with what they said, I became more active in voicing when I found them to be wrong in a situation.

#hospital #ih #intracranialhypertension #PTC #pseudotumorcerebri #IHLife #IHer #blog